I have posted before on the subject, and my position has not changed.  Getting K on a GFCF diet was one of the 2 best things we did for him (the other was starting his anti-seizure medication).  The change was quite profound and that is why we tell others our experience.  We do not try to indicate that they too can/will see such improvements, but that this is what has worked for K.  In many cases we have had other people tell us that the diet change has had significant, positive impacts on their children too.

In reading the research it is important to consider that the researchers are trying to answer a very precise, limited question and inferences and extensions beyond that question should be made carefully.  I did not read the full articles, just the above reviews, but in many cases the researchers do not comment on any changes, if any, that the participants had regarding their behaviours or autistic traits.  These points are outside the scope of the question being asked and therefore are not deemed relevant to the discussion.  For parents, these are the most relevant points and the underlying mechanism is secondary and this is likely one of the main reasons why average parents rely on anecdotal evidence over scientific research.  I’m afraid that on this particular topic I’m with the average parent.  If we were to follow the research K may not have been able to make such significant improvements over the last 3 years.  This is of course an unanswerable question as we don’t have a time machine to turn back the clock and try it all over again, but we are pretty secure in our supposition.

It is interesting to me that despite the bulk of the research in this area indicating that the GFCF diet has no impact on autistic symptoms and the leaky-gut hypothesis is flawed (in the studies I have seen to date) yet it is a very widely talked about and tried “treatment”. Our old documents repository tracked the number of times articles were downloaded and this was the most downloaded by a margin of 3.5:1 over the next most active article.  Obviously parents aren’t reading the research or they don’t believe it and, like us, decided to try it anyway because it is so frequently discussed with many good results- anecdotally of course.

Some final thoughts. “The diet” can be difficult at first and is definitely more expensive, but once a routine is established and you become familiar with what products are “safe” it is not hard to manage and has become second nature for us.  My last point is just to ensure that you are meeting your child’s nutritional requirements.  We worked with a dietician to ensure we were giving K everything he needed to thrive and that the GFCF diet was not going to have a detrimental impact on his health and development.

Thursday Jan. 17th, 2008 We started his medication at the initial starting dose of 50mg once daily. It has only been a few days thus far and the only side effects to note are some tiredness shortly after administering him his dose, though I think we may have ameliorated this by giving K his B12 nasal spray shortly after and this seems to keep him alert and able to focus during his intervention sessions, and some extra “clingyness”. Tracy and I think this may be the result of just needing some extra re-assurance if the drugs are making him feel somewhat strange mentally. We are hoping that this will pass. He does seem to have to work somewhat harder with his speech as he seems to elongate some of his words while talking. The only other peculiarity we have seen is some squinting or like K is trying consciously to blink and therefore it stands out more than normal blinking.It is unfortunate that being 4, and on the spectrum, it can be hard to tell people how things make you feel as many of those ideas are somewhat abstract and require higher levels of communication.

We are going to start gradually increasing his dose so I will update this post as we progress and hopefully I can capture what is going on, any side-effects, and how K is reacting.

Jan 22nd, 2008 and we have increased K to the next dosage level. He is now receiving 5omg twice daily. Again we noticed some additional tiredness and the “blinkiness” continues but not as pronounced. Except for an episode on the day we started treatment we have not witnessed or heard from his preschool that he has been having anymore seizures.

Jan 25th, 2008 and we had a meeting with K’s neurologist today. We talked about alot of things and how to proceed, much of the conversation revolved around her retiring and how we proceed from this point on. K seems to be having a much more difficult time controlling himself and many very simple things seem to be more than he can stand and result in tears, hopefully this will diminish. One of our topics of conversation was if his behaviour is being negatively affected and his performance in other areas is not showing significant improvement then perhaps the medication is not worth the additional stress on everyone, time will tell. Of note is the fact that he seems to be more echolalic lately, this has always been one of his “stims”, but it seems to be worse now as he continues to recite parts of his most recently favourite shows. This too may be a product of being more tired than normal and an attempt to keep himself busy and occupied instead of succumbing to being tired; we have seen this before as well, but hopefully it too will be short lived.

Jan 28th, 2008 K is now taking 50mg 3 times a day (morning, noon, and before bed) to manage his seizure activity during the waking hours and at this point it is not looking good. We have committed to ourselves, the neurologist, and K that we will try for 1 month to give us a good indication of how it will manage his seizures and impact his behaviour. If the last couple of days is any indication we may be in for a long 30 days! K seems to be even more out of sorts, everything that does not go his way is a MAJOR ordeal resulting in tears and he seems to very much just want to watch tv. We are not sure if this is just a result of the medication making him tired, which we know it does from what we saw yesterday (K almost fell asleep in his sensory swing early in the afternoon, which never happens normally, and he asked to go to bed early and fell asleep almost instantly) or if it is impacting his behaviour such that it is very hard for him to cope. The other change of note is the fact that unless he is watching tv he has a difficult time being still (we are limiting his B12 nasal spray because that can exacerbate his “hyper” activity level). He has always been busy, but not to the point of being hyper or manic, but lately he even seems to have a difficult time sitting in his “happy spot” at the dinner table. Again, we are not sure if this is another effect of the medication or if it is from it causing him to feel tired and the perpetual motion is how he stays awake. The latter would be very in keeping with what we know of our kids. K’s big sister does the same thing still, she busies herself with anything and everything to keep from succumbing to sleep. The outcome of which is usually very similar to what we are seeing with K; the excessive activity and the over-emotional behaviour. Hopefully as the dosage normalizes and he becomes accustomed to the medication these new personality traits will diminish to the point of being absent.

The only other thing of note in this area would be the change in his homeopathic medicine at the same time as the introduction of the anti-seizure meds. We are going to contact his naturopath to see if this is likely and adjust his remedies accordingly to help manage the behaviours. We did see similar behaviour in the past with a change in his homeopathic remedies so that may be a contributing factor.

Jan 31, 2008 K seems to be tolerating the medication much better. He is on 50mg three times a day and seems to be adjusting to its influences on him. The bad behaviour has decreased dramatically and he is almost back to his normal self. He does still seem to be tired and this has an impact on his mood and behaviour but usually just in ways that I have described above in that he becomes busier than usual and if we are especially lucky he does it all with a mischievious look in his eyes. That remark should not be viewed as fascetious but one of happiness as it shows he is doing things in a calculating way that he has deduced will elicit some response, in other words it would appear that he using some social context for his behaviour as this is a type of interaction with his mom and I. Atleast that is what I try to remind myself when I tell him not to keep doing certain things that he knows full well he is not supposed to do.

His preschool is so great at monitoring his behaviour and watching for any signs of his seizures and to date we have been episode free since shortly after starting the medication and we have not noticed anything here at home. The “blinkiness” was noted on the 29th but not today so that may be a transient effect or perhaps it is a result of some other aspect of the medication. He seems to be sleeping better as well (me touching wood) and has not been waking in the night as he sometimes does, especially this time of year, and has been very easy to get to sleep at night. Perhaps we should consider an adjustment to his bed time to ensure that he is getting enough sleep and is not becoming over-tired as that usually leads to episodes of night terrors. Sleep is going to be the subject of another post as I try to remember and document our 4 very difficult months last year when K did not sleep well at all and some of our strategies for helping improve the situation as well as what we experienced. I found an article recently that has some resources in this area and we have some information in the documents section on the main page, as well that have information on sleep issues in autistic kids, if you can’t find what you are looking for, try the contact us link and we would be happy to direct you to the information we have.

The appointment went well as we discussed all that has been going on since our last conversation in October. We reviewed K’s extensive supplement schedule, which I have been meaning to post, as well as our progress in working to remedy some of his issues from the last round of testing. For “homework” we are going to modify his supplement regimen slightly, and finally going to reduce some of what he is getting. The poor guy never seems to get to eat or drink anything without it being adulterated in some way.

We are also anxious to get the next round of test results. This will be our third round of testing since starting the DAN! protocol and we have been seeing some success. K is definitely improving and his overall health seems to be improving as well now that he is past that awful stage of perpetual infections from last spring! We have seen a nice reduction in some of his toxic load, which we attribute to the natural detoxification we have been doing with him. Now, if we could just get his yeast under control we would be very happy indeed.

All in all, a very long day for the entire family but we got through it without any serious incidents or meltdowns and K’s big sister took it all in stride. We were very proud of her. After all it isn’t much fun riding around in the car to go and sit in the Doctor’s office and then to pile in the car again to head home (thank you portable DVD players!). It’s hard enough for us, let alone a 4 and 6 year old, but we know it is worth it and I think she does too.

Tracy had taken K for a Far Infra-Red Sauna (FIRS) to help with his heavy metal detox when the owner of the wellness center suggested the foot spa as another form of treatment. We both had our doubts, not necessarily about its efficacy, but about K’s willingness to sit and soak his feet for an extended period of time. We were pleasantly surprised when he not only sat quietly and soaked his feet but he has come to start asking to have them.

Tracy commented on the color of the water after his initial treatment and I was wishing she had gotten a sample that we could analyze and see what the contents were. I was therefore pleased to see some of this information included in the documentation with the unit, but I would still like to perform our own analysis of the solution before and after treatment. I may even use myself as the guinea pig.

Look for future posts on the outcome of our at home study on the efficacy of foot spas for detox, I just need to find somewhere to analyze the water samples and look for all the heavy metals we are concerned about.